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Are Genetic Screening Benefits Truly Beneficial?

The tech industry is known for creativity, including its resourcefulness in offering enticing benefits to help employers effectively recruit and retain talent. Some of this creativity is stoked by a desire to combat higher-than-average employee mobility, and to accommodate a large percentage of millennial and Gen Z employees who, as a recent survey indicates, may value unique and plentiful benefits over pay raises. Creativity is also a function of access: many service providers are themselves tech companies, in close proximity with, and able to market effectively to, tech employers whose business mindsets already welcome experimentation. This is certainly the case with genetic screening services, a trendy employee benefit made possible, in part, by tech startups that have reduced costs and increased direct-to-consumer availability of these tests through robotics, automation, and the app-made-easy delivery process.

The New York Times recently published an article highlighting the trend, which also addressed some of the unintended consequences of increased screening—namely, an unnecessarily heavy reliance on results that may create a false sense of security for individuals whose screens do not indicate a genetic predisposition to certain conditions, or may prompt unnecessarily drastic countermeasures (e.g., an elective double mastectomy) for individuals who may have a genetic marker for a condition but lack other factors like family history, which would make the condition more likely to manifest eventually. In fact, a study published in Nature recently found that as many as 40 percent of variants in certain genes reported by a direct-to-consumer test were false positives, including some benign variants marked as “increased risk.”

These two stories highlight a potential dissonance for employers that choose to offer screening benefits. Preventative-care-focused health benefits generally appeal to both employers and employees alike because employers see them as a way to increase workers’ productivity through improved health, while reducing the total cost of providing other benefits, such as health and life insurance, and employees see them as an opportunity to take advantage of a service that they might not otherwise want to purchase for themselves.

However, reliance on genetic screening results provided without nuanced interpretation from a genetic counselor may actually increase employer-provided health care costs, specifically for employers that sponsor self-insured health plans. Because some employees may opt for drastic surgical procedures as a preventative measure, the employer may increase its costs for these tests and procedures. Additionally, employees may take off more time from work for medical exams and surgery, creating additional costs for the employer.

Genetic screening can also create privacy and compliance concerns for employers charged with responsibilities under HIPAA, the Americans with Disabilities Act (“ADA”) and, specifically concerning genetic information, the Genetic Information Nondiscrimination Act (“GINA”). The ADA prohibits employers from discriminating on the basis of disability or perceived disability, which can include genetic conditions, while GINA prohibits employers and health insurers from discriminating on the basis of genetic information, and bars employers from requesting genetic information from employees or prospective employees. Group health plans are also prohibited from collecting genetic information.

GINA does not apply to life insurance, long-term care, or disability insurance (although state laws may provide protections). As a result, these types of insurers can and do ask about health, family history of disease, or genetic information and may use the presence of certain genetic markers to limit coverage to individuals, even though they may not result in an actual disease. Thus, there is a concern that genetic testing results may lead to discrimination against individuals attempting to obtain these other types of insurance.

Employers that choose to offer genetic screening benefits can reduce their risk by taking several steps, such as offering the benefit via an independent third-party provider with appropriate data privacy and security procedures. Further, to ensure compliance with GINA and to avoid the appearance of discrimination on the basis of genetic information, employers should not seek to obtain employees’ test results directly from the third-party provider (including aggregated, “sanitized” data), and should neither require nor encourage employees to share the results of their screening with the employer or their health plan.


Time will tell whether genetic screening benefits are a fad or destined to become part of the generally accepted preventative care standard. But for now, when properly administered in compliance with all applicable laws, they may have the wow factor that tech employers seek to appeal to their employees and potential hires.

©2020 Epstein Becker & Green, P.C. All rights reserved.


About this Author

Cassandra Labbees, Epstein Becker Green Law Firm, Employee Benefits Attorney

CASSANDRA LABBEES is an Associate in the Employee Benefits practice, in the New York office of Epstein Becker Green.

Ms. Labbees:

  • Advises clients on designing, implementing, maintaining, administering, and terminating employee benefit plans, such as defined contribution, defined benefit, and health and welfare plans

  • Counsels clients on HIPAA privacy and security compliance issues and on their fiduciary responsibilities under ERISA

  • ...
Katherine Smith, Epstein Becker Law Firm, Washington DC, Labor and Employment Attorney

Katherine Smith is an Associate in the Employment, Labor & Workforce Management practice, in the Washington, DC, office of Epstein Becker Green. She will be focusing her practice on addressing wage and hour issues, discrimination claims, and retaliation disputes, as well as assisting in advising employers on practices and procedures, including employment policies and handbooks. 

Ms. Smith received her J.D. from Boston University School of Law (BU Law).  At BU Law, she was a member of the American Journal of Law and Medicine and served as a Certified Student Attorney in BU Law’s Civil Litigation Program (Employment Rights Clinic), where she primarily represented clients seeking unemployment benefits from the Massachusetts Department of Unemployment Assistance. She also holds a Master of Human Resources and Industrial Relations degree from the University of Illinois.

While attending law school, Ms. Smith served as a Judicial Intern for the Honorable Colin S. Bruce of the U.S. District Court for the Central District of Illinois.